KerryAlex, 21 years old. Desperately waiting for a double-lung transplant due to 'End-Stage' Cystic Fibrosis.
Engaged to my amazing partner Josh, living with our two Pomeranian puppies Tinkerbell and Milly-Mia :)x
So I've been made two very lovely blog headers, won't say who made each one as don't want to influence any decisions! So even if you are just passing and don't normally comment can you pleaseee, number 1 or 2!
I've always kept my blog private from friends/family, because I didn't want people to realise exactly what I go through and how I'm feeling sometimes. It's much easier to put on a brave face and a fake front with a smile, than have to explain to people exactly how difficult life is, or why, perhaps, I can't do certain things. I wanted to protect people, my close family and Josh know what it's like living with CF but nobody else. I don't want people to worry about me, or feel sorry for me, so I've hidden the reality from them.
I may go through and delete everything I've written prior to this and start fresh. I want people to be involved now, most people who read this blog have CF or know someone with CF so my blog isn't really making a difference, as those who read are experiencing the same things themselves.
I guess I'm at the age now where I want people to understand. I don't want to hide anymore and it's time I opened up and let people in. So if all of a sudden all my previous blog posts disappear it's because I've decided to take the plunge and open up to everyone, I hate that I'm kind of living a lie, only sharing part of myself with the people who deserve to know the truth.
I want to make a difference too, so many people who blog have already has raised more awareness than I could even dream of! I mean, there are members of my own family that have no idea what my daily life routine involves half of them don't even know I use oxygen! I'm a private person, I've always been embarressed to involve people and didn't want people to have pity on me, I've always wanted to be 'normal' so if I kept the sick part of me a secret, I could still be 'normal' in their eyes.
So to those of you who have read, commented and supported me on my 'secret journey..' I'm so grateful, you've all made a difference and I've taken all advice on board, I even cheer when I get a new follower (hehe!)
My private journey ends here.
My blog will now be an open book (to a certain extent obviously) and I'll be welcoming the world into my life :)!
I've been thinking today what 'transplant' actually means to me. To some it may just be about having a 'normal' life with healthier lungs and a second chance.
To me, it means having a future, not just a past and present.
The future at the moment is a worrying thought, I'm afraid to commit to anything that needs to be planned because day-to-day, everything changes, I'm worried to plan our wedding because I have no idea how well, or not, I would be on the day. I'm scared to say 'yes' to a plan knowing full well I may have to cancel, sometimes on the day, I'm afraid to book holidays (admittedly in England,) but I'm never sure when I may suddenly need to be admitted, or have a course of IV's. CF is very predictable but at the same time, very unpredictable. I'm feeling so unwell at the moment, but tomorrow I could wake up feeling a bit better.
I was recently told I didn't have much more than a year left to live, which is very scary and was not something I was expecting to hear at 19 years old. For some reason I had this naive thought that I was untouchable, I never imagined myself getting to the stage of needing transplant and if I did, I expected myself to be a lot older than I am. Also, I don't realise how bad my CF has actually got, I think because I've lived for so long being 'sick' I'm unaware of what it feels like to be healthy, so most days are bad days but you just learn to live with it and get on. I worry that if I was listed and called for transplant tomorrow, I'd refuse because I don't feel 'ill' but that is the reality of this disease, it's a slow, gradual but steady decline, so sometimes you don't realise how unwell you actually are until you try to do something that used to be second nature. I never imagined I'd need help getting up the stairs, I didn't see myself using oxygen, I definitely didn't imagine I'd be facing my own mortality before I was 20.
So transplant to me, is hope. Hope that if I am lucky enough to get on the list, lucky enough to receive a transplant and lucky enough to survive the operation and begin my second chance I can achieve my dreams, goals and live my life the way I was destined to. It's also hope that Josh and I can have our dream wedding. Hope we can have our dream honeymoon of travelling across America. Hope we can travel to places we can currently only imagine travelling to. Hope that I can get my psychology degree and go to work for the first time, even if it's McDonalds, lol! It's hope that I can make plans and stick to them.
It's hope that one day, I could lead a normal, much healthier life.
My life now is not awful, but it could be so much better. I can't really do anything by myself anymore, just things like going to the shop, I can't walk that far and I wouldn't be able to carry bags home. Just silly, little things that people take for granted. Sometimes I wish I could have one brilliant day, where I can run up the stairs, have a relaxing bath, walk to my hearts content, sing along to my favourite songs and not having a huge coughing fit or be so breathless that I can't carry on. I'd love to go to a party, wear ridiculously high heels and dance all night and my only worry is that my feet will ache. I want to take my puppy for a walk and not be exhausted. I want to be able to go on holiday abroad and not worry about using oxygen on the plane, or whether the hotel has a lift, or many stairs. I want to make spontaneous plans.
I'd just love to have one day where I don't need help doing simple things, a day where I don't need to rely on anyone but myself.
Unfortunately, Transplant is not a cure. It in itself bring along a whole list of problems. The transplant assessment process is an exhausting, daunting, emotional, down-right scary thing. You need to be ill enough to have a transplant but you have to be well enough to have a general anaesthetic. Many people never receive their transplant in time and die on the list, just waiting for their second chance - yet it doesn't come in time. Everyday you are waiting, yet seeing yourself get sicker and sicker. Even during or after the operation there are risks, I could die on the operating table, I could die afterwards from complications, I could die later on from rejection.
But if I didn't even opt for transplant, I'd be facing a certain death anyway. So having a 'chance' that I could die is better than having a certainty and it's a risk I'm definitely prepared to take.
There are not enough organ donors in the UK, which is why people die on the waiting list. It is why I might not survive. It's scary but you are more likely to need an organ than you are to donate one. https://www.organdonation.nhs.uk/ukt/RegistrationForm.do
Please, sign the register. The thought of dying is a horrible thought for anyone, but something good could come out of an awful situation, by signing the register you could save a life and the gift of life, is the greatest gift of all.